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Family carer needs in advanced disease: systematic review of reviews
  1. David John-Tom Marco1,2,
  2. Kristina Thomas1,
  3. Serra Ivynian3,
  4. Helen Wilding4,
  5. Deborah Parker3,
  6. Jennifer Tieman5 and
  7. Peter Hudson1,6
  1. 1Centre for Palliative Care, St Vincent's Hospital Melbourne Pty Ltd, Melbourne, Victoria, Australia
  2. 2Medicine, The University of Melbourne, Melbourne, Victoria, Australia
  3. 3Faculty of Health, University of Technology Sydney, Sydney, New South Wales, Australia
  4. 4Library Service, St Vincent's Hospital Melbourne Pty Ltd, Melbourne, Victoria, Australia
  5. 5College of Nursing and Health Sciences, Flinders University, Adelaide, South Australia, Australia
  6. 6Nursing, The University of Melbourne, Melbourne, Victoria, Australia
  1. Correspondence to Dr David John-Tom Marco, Centre for Palliative Care, St Vincent's Hospital Melbourne Pty Ltd, Fitzroy, Victoria, Australia; dmarco{at}unimelb.edu.au

Abstract

Background Family carers are vital in the management and delivery of home-based palliative care. Decision-makers need to know what the most commonly expressed unmet needs of family carers are to target available support services.

Aim To identify the most commonly expressed needs of family carers of people with an advanced disease, assess the quality of current evidence, and set an agenda for future research and clinical practice.

Design A systematic review of reviews, prospectively registered on PROSPERO. Study quality was assessed using the Joanna Briggs Institute critical appraisal checklist for systematic reviews and research syntheses.

Data sources MEDLINE, Embase, Emcare, PsycINFO, CINAHL, Informit and Cochrane Library were searched for reviews about the needs of carers looking after patients with advanced disease from 2010 to 2020.

Results Findings from 21 reviews identified emotional support, disease-specific knowledge, carer role responsibilities, self-care and general practical support as the most commonly expressed needs expressed by family carers. Additionally, access to professional services, formal education opportunities and communication with health professionals were identified as caregivers’ preferred ways of having these needs met. Extraction of carer-specific needs was challenging at times as results were often combined with patient results in reviews.

Conclusion Practical difficulties exist in effectively resourcing services to meet the needs of family carers. Information regarding the most commonly expressed needs shared by caregivers and their preferred delivery source can provide an opportunity to focus available support services to achieve the highest possible impact for carers of patients with advanced disease.

PROSPERO registration number CRD42018088678.

  • chronic conditions
  • home care
  • terminal care

Data availability statement

All data relevant to the study are included in the article or uploaded as supplementary information.

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Data availability statement

All data relevant to the study are included in the article or uploaded as supplementary information.

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Footnotes

  • Contributors DJTM, PH, KT and HW were involved in the planning of the research. Search strategies were designed and executed by HW in consultation with DJTM and KT. DJTM, KT, SI were involved in the review and data extraction phases. All authors contributed to the interpretation of findings and the manuscript. DJTM is guarantor of the work.

  • Funding This work was supported in part by the Australian Government Department of Health, National Palliative Care Projects Grant (H1617G024).

  • Competing interests None declared.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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